Lessons from Down Syndrome: Learning from Herbie

How we respond to disabilities says a lot about our society and ourselves.

Posted Dec 17, 2016

Recently, I attended a National Hockey League game that pitted the Nashville Predators against the Colorado Avalanche. As I walked into the arena, there was a young man with Down Syndrome passing out programs for the game. I was struck by the fact that many people entering the turnstiles deflected their path to get programs from other attendants and I thought about this while watching for several minutes. Then, when I greeted this young man and took a program, his face lit up. He was genuinely pleased to talk with me. I asked about his favorite player: He said it was Shea Weber and that he was sad that Weber had been traded to another team (the Montreal Canadians).

I have been so very fortunate to have people with Down Syndrome be a part of my life for long time. Growing up, our neighborhood group included a young man named Herbie who hung out with us. He was a bit older and would participate in our adventures as much as he could. Herbie could ride a bike and would pedal through the neighborhood with us. And he would play football and was always happy and excited when he caught the ball. But, when we played basketball he would watch from the sidelines but not play.

In retrospect, I suspect that the rapid nature of the game perhaps made him apprehensive about joining in. We all knew that Herbie was a bit less coordinated and that he needed to take breaks when riding our bikes around. So we were careful when playing together and waited for him to catch up when out on our "bike hikes.” I have since learned that many people with Down Syndrome are born with heart murmurs and other cardiac problems so it is likely that he would get tired more quickly than the rest of us because his heart wasn’t working quite right. But the important point here is that I can honestly say that because Herbie was part of our group, despite being cognizant of differences, we simply accepted Herbie as another person in our group in the way that children often simply take for granted as “normal” whatever happens in their own lives.

I now know that this experience was quite unusual when I was growing up in the 1960s. At that time, most people with Down Syndrome were taken away from their families and put in institutions. So, Herbie’s family was remarkable for the time and I can only express my gratitude post hoc for the wonderful gift this conveyed upon those of us who got to know him.

Perhaps because of this background and my ongoing work in helping children with Down Syndrome learn to talk[1]—and to be in school with other children—it seemed odd that folks at the arena sometimes walked past without greeting or taking their program from the young man with Down Syndrome. You see, most people with Down Syndrome are very social and enjoy interacting with others. In the work I do with children with disabilities, we think of Down Syndrome as quite different than autism (I enjoy people with ASD, too!) because people with autism have a reduced motivation for social interaction. In contrast, people with Down Syndrome often show social engagement that's even greater than in other children, even those without disabilities[2].

It is understandable why some people may shy away from those with Down Syndrome. After all, people whose appearance may be a bit different than our own can be unsettling. And the speech of some children with Down Syndrome can be difficult to understand. Even when I was a child, I noticed that although Herbie had relatively intelligible speech, he tended to speak in short phrases. And he could not understand what the rest of us in the group are saying when too many people were talking at the same time. And of course, I noticed that Herbie looked different: His eyes included epicanthal folds, his fingers were short, and he had a crease on the palms of his hand the rest of us did not have. But this was not unsettling because Herbie was simply a part of our group.

My experience is by no means unusual. When I was on the staff of the Down Syndrome clinic at Vanderbilt University Medical Center, parents often told me about the unexpected joy and positive impact their child with Down Syndrome had on their lives, on the lives of the other children in the family and on the community. I know that my own life was enriched so much by Herbie and the many other people with Down Syndrome I have met over the years. It has been profoundly instructive as well as enriching.

In the modern world, there seems to be a never-ending quest to engineer "perfect" human beings. But this raises profound questions about who are and who we should be. How do people with disabilities generally and especially people with Down Syndrome fit into this emerging "perfect" world? Why do we naturally shun people who look different? How can we be mindful of how everyone, even those with disabilities, fits in to our community? What are our values as a nation towards including people with Down Syndrome and others who are "different"? Do we greet them or do we exclude them? It has become clear that how we view—and include—people with Down Syndrome says a lot about us as individuals and as a society.  I can only say that my own life would be far less meaningful and wonderful without having met Herbie.

References

[1] Camarata, S., Yoder, P., & Camarata, M. (2006). Simultaneous treatment of grammatical and speech-comprehensibility deficits in children with Down syndrome. Down Syndrome Research and Practice, 11(1), 9-17.

[2] Sigman, Marian, Ellen Ruskin, Shoshana Arbelle, Rosalie Corona, Cheryl Dissanayake, Michael Espinosa, Norman Kim et al. "Continuity and change in the social competence of children with autism, Down syndrome, and developmental delays." Monographs of the society for research in child development (1999): i-139.